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Will Update

July 25, 2013 by
Will’s surgery was a success!

We were dreading the morning of because he wasn’t able to eat after midnight, but I woke him to feed at 11:30 p.m. and he went right back to sleep. He slept all the way through the night and the morning went surprisingly smooth. We took Ella with us to the hospital and even she cooperated! We arrived at the Children’s Hospital (Tuesday, July 23) at 6:15 a.m. We were able to play with all the new toys and before we knew it, it was 7:45 a.m. and they were coming to take him in.

I chose to not go back to put him under. I felt it would be too hard on both of us; him wanting me to hold him and me not being able to see him cry. As the anesthesiologist walked down the hall, his big blue eyes looked back to see Ella & I peeking around the corner. It was heartbreaking. I hate those double doors! As they opened up, I was fighting back tears so that Ella didn’t see me cry.

We used this experience as an opportunity to prep her for her next surgery too. While I’m not happy that Will had to go through surgery, it does help for her to see that she’s not the only one to endure it.

We were told the surgery would take 2 + hours and that there were a few different scenarios that could play out. As I mentioned in my previous post – we were prepped for 3 different outcomes. Around 9:25 a.m. the anesthesiologist came to let us know that the surgery was over, ensured us that he did great and the surgeon would be in to debrief us.

The surgeon then came out and informed us that much to his surprise, the testicle was there. It was very high and half the size of the other, but it was still there. They were able to remove it and place it in it’s rightful place. He indicated that it could move up & out again and if that happened we’d remove it entirely. He also stated that there was a hernia associated with the issue as well, and they removed it. We now wait to see if it grows and functions as he grows older and goes through puberty.

We were told that someone from recovery would come and get us once he woke up. We waited for about a half hour and no one came for us. Finally a nurse came to say he was still sleeping, but she could take us back. When we got back there his nurse indicated she was worried about his airway because he was pretty full of mucus. We tried over and over again to get him to wake up and cough it out and he just wouldn’t do it.
As time went on you could see the concern grow in the nurses faces. We had been in recovery for over an hour and could not get him to wake up, no matter how much we tickled his feet, pinched his cheeks or rubbed his head. The anesthesiologist was coming back and forth and decided it was time to give him some anesthesia reversal meds to try to get him out of it. After three separate doses, nothing was working. I was getting very worried because it was almost two hours and we could not get him to respond to us and he couldn’t go without the oxygen mask without his levels dropping.

We had two options left – 1)stick a tube down his nose into his throat to get him to cough up the congestion or 2) get a cold wet washcloth and rub it all over him. Obviously, we opted for the latter and after two long hours we were finally able to get him to open his eyes. After he was able to breath without oxygen for 15 minutes, we were released to our room.

Will remained pretty sleepy and not very hungry for the majority of the time, but was able to eat right before it was time for us to pack up and go home. They estimated his recovery time to take one full week and that he could move around based on his comfort level.

We assumed he would be immobile for a few days and when we got home he was a bit whiney and definitely slow moving, but shortly there after returned to his old, crazy self. He began to eat like normal (a lot), nap like normal (2+hours) and move like normal (all over the place).
Even though his bandages are bloody & he’s bruised and swollen, he acts like it doesn’t bother him. He even slept through the night!

I continue to be amazed by the strength of my children. They are by far the toughest, most amazing little humans I know. They’re also sweet. Don’t believe me, check out the picture Ella made for Will the day of his surgery!
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Filed Under: being a mom, Kiddos, parenting, raising kids

Overflowing

May 16, 2013 by
It’s been over a month since I last wrote (not counting work related posts like this one). Typically I fall into dry spells because there’s nothing to write about, but in this case – life has been so hectic that I just haven’t had the time. Now I feel like my brain is overflowing with things that are worth documenting that one post won’t be enough! Between selling our house, buying a new one, going on a honeymoon, scheduling surgeries for both kids, family photos, participating in the March of Dimes Walk – the list of things goes on and on and on.

As I sat down though the most important & ironic thing is the fact that my last post was about the loss of a dear family friend and the importance of spending times with the ones you love. Since then I sadly lost another family member due to failing health and my grandfather was rushed to the emergency room with internal bleeding. He has since been released from the ICU but the scare it created is something my family was not prepared for. Hopefully as we go through many other tests, everything will come back in the clear and we can stop worrying.

Since we’re discussing medical ailments, I’ll use this post to update on what’s going on with the kiddo’s and upcoming surgeries. We’ll start with Will since he’s easier. Will was born with a condition called cryptorchidism, more commonly known as undescended testicle, which affects 6% of all newborn boys and it either means that the testicle just didn’t drop or it doesn’t exist at all. Most of the time, if it’s there, the testicle drops on it’s own within the first year of life. In our case, that hadn’t happened – which made me worry that he may not have two at all.

We finally had the much anticipated ultrasound and were able to locate it within his abdomen. I feel very relieved for his sake, however that now means we have to have surgery to bring it down.  Nothing is on the books yet, but we meet the surgeon tomorrow to get things in order.

So now for a regular update on Will:
He’s already 9 months old! It makes me sad that he’s growing so quickly, I wish I could freeze him exactly as he is right now. We had our 9 month check up last week and he weighs 21 lbs. 9 ozs. and is 29″ long. He is the most mobile kid I have ever seen, considering he hasn’t figured out crawling or scooting yet. He rolls all over to get to where he needs to be. That doesn’t mean he isn’t trying to crawl though and I think any day now he’ll be on the move. He’s still not in love with solid foods, but he loves the Gerber Puffs.

Onto Ella. As most of you know Ella was born with a unilateral cleft lip & palate. That means we have undergone many surgeries already, with an unforeseen amount remaining. Overall we have been happy with Ella’s surgical path, however as she’s grown – things have stretched and shifted, making us feel like she could benefit from another surgery. Our surgeon is conservative and prefers to wait until they are absolutely necessary so we have held off.

In the beginning of April I took her to a routine dental cleaning and learned that she had cavities within a few of her bottom teeth and the teeth in her cleft line could benefit from some work as well. The front teeth are extremely important to keep in a healthy state. If we were to pull them out (after all they are baby teeth) it would allow her bone to shrink even more than it already is, thus making a bone graft down the road more complicated. So, within a matter of seconds the appointment went from conversations of what prize she would get, to when we could schedule surgery.

I quickly got on the phone with our surgeon and was lucky enough to get into Cleft Clinic that same week. After our meeting the plan was set in motion; in addition to the dental work, we’ll have a lip & nose revision, fistula repair and the tubes replaced in her ears. As you can imagine, speech development is also affected by cleft lip & palate, so we’ve been in speech therapy since Ella was 2 years old. Recently it seems like her progression is at a stand still and I have yet to see an improvement in the air escape or hyper-nasality. Therefore, in addition to the other procedures, we are exploring the possibility of a pharyngeal flap (P Flap) surgery to create a seal between the nasal & oral cavity. I have about 1,000,000 questions and have yet to decide the best way to move forward but the only real way of knowing is to undergo a nasal endoscopy again. We have done that once before and it was terrible. It consists of a rubber hose with a camera on the end being inserted into her nostril and down into her throat. She then has to be cooperative enough to follow their prompts to say certain sounds, all while we watch to see if the closure is happening. At this point we’re leaning on having the scope again so that we’ll know for sure and then get something on the calendar.

I had wanted to get both kids surgeries handled before the end of June, so that they could recover in a home that is familiar and comfortable to them (more on the house selling/buying in a future post), but as this continues to drag out – it doesn’t seem realistic to accomplish it all. Wish me luck!

So now for a regular update on Ella:
She continues to be the most rambunctious, crazy kid I know. She ceases to amaze me with the witty things she says. Tonight at bedtime I was asking her to act like “my big girl” (we’re having potty issues again randomly). She replied with, “Well dad wants me to stay just like I am, but I can’t help getting bigger. I didn’t make that choice! God did! Silly God.” We had a great turnout at our 2nd March of Dimes Walk on behalf of Cleft Awareness (more on the walk in a future post) this past weekend. She loved spending time with her cousins and couldn’t believe that we all had shirts with her face on them!
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Filed Under: being a mom, Cleft Awareness, Kiddos, parenting, Uncategorized

Sweet and Sour

October 18, 2012 by

Tonight as I put Ella to bed we laid talking and telling stories just like every other night. In the midst of conversation I asked her what she wants to be when she grows up. She replied, “I just want to be a mom like you.” Cute, right? She went on to say, “I want to be just like you. I want to dress like you, talk like you and be pretty like you,” all while gently stroking my face. Talk about sweet!

It’s not surprising, Ella is sweet. Everyone she meets instantly falls in love with her, even complete strangers. I was in a good friends wedding a few weeks ago and we let Ella attend the ceremony so she could see the bride in her dress. It was an hour long ceremony which required her to be silent for the most part. Afterwards a woman I had never met approached me at the reception to tell me just how great our little girl is and how much they enjoyed her during the ceremony. She was silent (with the exception of a drawn out Aaaamen)! How, in that short amount of time, could she have enough impact for this woman to take the time and seek me out to tell me about it? Her magic is crazy.

As much as she is sweet, she’s just as sour! In the past, when thinking about my hypothetical children, I assumed I’d have more than 3 years before I heard my child say they didn’t like me. I was wrong. I can’t begin to count how many times I have heard “I don’t like you and I’m not your friend anymore.”

True to everything she does, Ella is the extreme on both ends of spectrum. When she’s sweet she is very gentile, compassionate and complimentary. When she’s sour she is aggressive, controlling and full of attitude. For now I will just remind mysef that even after all the sour times we have, she’s still a sweet little girl!

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Filed Under: being a mom, parenting, raising kids

This Too Shall Pass

February 1, 2012 by
It seems that as of late, I am continuously whispering this ancient proverb numerous times just to make it through the day. My common stressors range from everyday work struggles to trying to juggle too many things at one time to fighting with Ella every day to complete the most basic tasks.

Each day as issues arise I try to remain calm and tell myself, “This too shall pass.” As a matter of fact the image to the right monopolizes the 27″ of space on one of my work monitors.

Hopefully tomorrow is no different. Ella is scheduled for surgery to replace her tubes in her ears at 7 a.m. tomorrow morning. In the grand scheme of things, the surgery is minor. It’s definitely not like the 3 hour surgery at 4 months old where we anxiously awaited as our surgeon reconstructed our precious little girls face, or like the 4 hour palate repair at 10 months old-which resulted in a very long and painful recovery.

As a matter of fact, we have been through this surgery before and it was a breeze. It seemed we had barely sat down in the waiting room to drink our coffee and the ENT had called us back in to see our little lady.

So why am I so nervous? Probably because “we” really haven’t been through this before. Ella has. Yes we wait and stress and pray, but we aren’t really experiencing anything. She is.

I would give anything in the world to trade places with her. I just want to go through it first so I can honestly tell her what to expect. I hate blindly saying, “Honey – everything is going to be okay. It’s not going to hurt.” What the hell do I know? I have never even had stitches in my 29 years of life (childbirth doesn’t count), let alone gone through 4 surgeries by the age of 3. I have never been under anesthesia and with the exception of childbirth, I have never been in the hospital. Nothing.

The one thing to ease my mind? Ella is the strongest person I know. Tomorrow she will go through surgery and she will bounce back quicker than we could have ever imagined. We will bring her home and she will go back to playing with her dolls, singing her songs and entertaining us as usual. Wishful thinking? Maybe. Even so, this too shall pass.

Photo: November 2010 – Ella playing right before we went into  tube surgery the last time.
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Filed Under: being a mom, Cleft Awareness, Kiddos, parenting, raising kids

Ella’s Story – Part 3

June 17, 2010 by
Our second surgery happened on August 27th when Ella was 9 months old. This was to repair her palate and insert ear tubes. Since the lip had been repaired the gap in the palate was much smaller, but our surgeon was still unsure if it was going to be too far of a stretch. Even though it was our second surgery, we still went through the same uncertainty of what to expect. We went into surgery at 7:30 a.m. and since the cleft was so much wider and longer than they had expected, it took a lot longer than the first procedure. Dr. Shehadi was able to completely close the palate, which was great news. Once again we spent 1 night in the hospital however, we should have stayed longer.

The recovery process didn’t go quite as well as the first surgery. Ella was not eating and very sad and cranky after the surgery. We struggled to get her to eat anything. We were told that in order to leave she had to drink a certain amount of liquid. Since she was so unhappy she didn’t meet the requirements. Joe thought that since she came close enough, we could take her home and figure it out from there. So, we packed up and came home. The moment we walked in the door she was a completely different child. She was happy and excited to be home and instantly got into her bouncy horse and went crazy.

Maybe it was the fact that the house was filled with family that she loves, but as soon as they all left the atmosphere changed again. She returned to her unhappy phase and refused to cooperate. We were once again struggling with no eating, no drinking and no sleeping. I was starting to panic that she was going to become dehydrated; wet diapers were few and far between. Since Ella refused to sleep through the night, my mom thought that I needed a break and came to help out.

Almost an entire week and a half after surgery was pretty painful for all involved. It was frustrating but I most of all I felt so awful for Ella and the pain she must have been going through because normally she is the toughest kid I know. We were beginning to worry that the experience may change her personality forever. Then, finally the day before I had to go back to work she turned over a new leaf and returned to her normal, happy and smiling self. We were so grateful to have her back and even more appreciative for just how special she is.

At the follow up appointment with our surgeon I understood why Ella might have been in so much pain during recovery. Even though Dr. Shehadi initially closed the palate, the gap was just too far and stretched to thin. Sadly, part of the palate tore open after the repair and a hole remains there today. I can’t imagine how painful that must have been for Ella at the time. I now completely understand her sour mood. Poor girl!

We thought we would need the palate repaired immediately in order to encourage normal speech development and prevent other issues however, we have been back to our surgeon a few times and at this time he thinks it’s OK to wait. We trust him so we will wait until then. We go back to Cleft Clinic in October where we will meet with the team and learn what our next plans of action are. As usual, the waiting game continues.
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Filed Under: being a mom, Cleft Awareness, Kiddos, parenting, raising kids
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